One-in-a-million people are living with EHE worldwide.

Our mission is to find treatments and a cure for this rare cancer by advancing research and driving collaboration between patients, researchers, and clinicians.

We envision a world where Epithelioid Hemangioendothelioma (EHE) is easily diagnosed and treatable. Join our dedicated community by subscribing to our emails.

EHE Biobank

Patients Powering Research for EHE

Patients are the key to finding new treatments for EHE! Researchers need tumor tissue and fluid from EHE patients to understand disease progression and speed the development of new drugs and therapies.

EHE Global Patient Registry

Patients Powering Research for EHE

The EHE Global Patient Registry empowers people with Epithelioid Hemangioendothelioma (EHE) to join together to improve our understanding of this ultra-rare sarcoma. We need every EHE patient to join this critical tool used to support researchers searching for treatments and a cure for EHE.

Consensus Paper on EHE Management

The Consensus Paper is a powerful, EHE-specific resource for patients, caregivers, and medical professionals that answers critical questions regarding diagnosis and treatment. Patients are encouraged to read it to better understand EHE and facilitate more informed discussions and decision-making with medical teams.

Patient Services

Whether you are newly diagnosed or have been living with EHE for a while, you are not alone. The EHE Community is stronger together and includes patients, their families and friends, and the many specialists working tirelessly to find treatments and a cure.

Visit Patient Services for resources, education, and support for patients and their caregivers.

Latest EHE News, Events and Research

EHE Advocates at the ESMO Congress 2024

EHE Advocates at the ESMO Sarcoma and Rare Cancers Congress 2024

By The EHE Foundation | March 29, 2024

In March Denise Robinson, Director of Research for The EHE Foundation attended the ESMO Sarcoma and Rare Cancers Congres 2024 in Lugano, Switzerland. This congress brought together world-renowned experts including researchers and clinicians, to present and discuss the latest advancements in the treatment of sarcomas and rare cancers.  Topics ranged from the role of immune […]

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PUSH Project: Pushing Rare Sarcoma Beyond Hope

PUSH Project: Pushing Rare Sarcoma Beyond Hope

By The EHE Foundation | March 29, 2024

Under the umbrella of the Connective Tissue Oncology Society (CTOS), the Ultra-rare Sarcoma Working Group, a broad group representing the global sarcoma community, including clinicians, scientists, patient advocates, and non-profit organizations has come together to establish a consortium, PUSH, to collect and make the best use of all available evidence to facilitate the development of […]

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EHE patients' voices inform paper on sirolimus for the treatment of EHE.

EHE patients’ voices inform paper on sirolimus for the treatment of EHE.

By The EHE Foundation | March 15, 2024

“The patient perspective on sirolimus for epithelioid hemangioendothelioma (EHE): results of a community survey highlighting the importance of equitable access to treatments” was published on February 25, 2024, in the scientific journal Frontiers in Oncology. In early 2023, EHE patient advocates surveyed the global EHE community to gain patients’ perspectives on sirolimus to generate information […]

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Science Saturday: Patient-Powered EHE Research

Science Saturday: Patient-Powered EHE Research

By The EHE Foundation | March 13, 2024

On Saturday, February 24, 2024, Denise Robinson, Director of Research provided an update to the global EHE community focused on ‘Patient-Powered EHE Research’. Denise highlighted research projects The EHE Foundation is funding and supporting through resources, and projects initiated by the foundation including the EHE Global Patient Registry and EHE Biobank. Denise highlights progress made […]

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Guy Weinberg, MD

Welcome New Board Member Guy Weinberg, MD

By The EHE Foundation | March 11, 2024

The EHE Foundation is delighted to announce that Guy Weinberg, MD, has joined our Board of Directors. Internationally recognized in the field of anesthesiology, he is, importantly, the father of an EHE patient, bringing a multifaceted expert and personal perspective to The EHE Foundation, helping us advance our mission to find effective treatments for this […]

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Rare Disease Day - February 29, 2024

Rare Disease Day 2024

By The EHE Foundation | March 8, 2024

Rare Disease Day was February 29th, a very special rare day! We asked our community to help us build EHE awareness by submitting their EHE stories so that we could share them on our social media platforms and website to shine a light on EHE and rare diseases! Throughout the month, we shared the stories […]

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EHE community donations expand grant.

Planting Seeds for Future Developments: EHEF Research Grant Grows

By The EHE Foundation | June 14, 2024

The EHE Foundation invests in novel EHE research yearly through its EHE Research Grants Program. The program officially began in 2021, with only a few applicants interested in EHE research. Today, 10 applicants have submitted proposals in our 2024 grants cycle.  Along the way, we have had the good fortune to meet and collaborate with […]

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Ikena Oncology's IK-930 Trial Discontinued

Ikena Oncology IK-930 Update

By The EHE Foundation | June 7, 2024

On May 28, 2024, Ikena Oncology announced they are discontinuing the development of IK-930. We share your frustration and disappointment and understand the devastating impact felt by patients. Following this announcement, we met with Ikena to impress upon them the urgency and importance that patients deriving benefits from IK-930 continue to have access to the […]

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EHE Mental Health Awareness

Navigating the Mental Health Challenges of an EHE Diagnosis and Treatment

By The EHE Foundation | May 30, 2024

A cancer diagnosis can be one of the most daunting experiences in life, not just physically, but mentally and emotionally as well. The journey through diagnosis, treatment, and everything in between often feels like a roller coaster, filled with uncertainty, fear, and a range of intense emotions. It’s important to acknowledge these challenges and find […]

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